This is a blog about epilepsy. I have lived with seizures for 25 years now and I want to share my experiences to allow others with epilepsy a chance to compare their experiences to mine and to allow those without epilepsy to understand further the condition and how it effects one. I had the VNS device implanted 4 years ago and have posted on that extensively. Please feel free to comment and I will try to respond.

Friday, June 30, 2006

VNS Implant Picture

I try to post this pic quite a bit as it is a handy refrence when I want to show someone where the wires attach and where the pulse generator is located. Although you can barely detect them under the skin, it is not always easy for people to grasp the concept until they can see the diagram.

My daughter has had the implant 10 months now. She still has seizures (5-10 a month) but the recovery time has definitely improved and so has her mood. She is not as depressed and has much more energy. I'm glad she had it implanted and hope to see more improvement as the dr said to give it at least a year to know if it is helping her. She is 21. We did not see much in the way of results for months because the surges are very gradually increased in strength so you have to be patient. I think it has stopped 2 seizures when I thought she was going to have one. But it is difficlult to know when that will happen and she doesn't seem to be able to tell me. So that was just luck that I was close and saw that she might fall. I do recommend it if medicines aren't working.

I have a client that has the implant and today he had a seizure and I passed the magnet to him and he swiped it across the area and it did stop the seizure,but he did cough when he did so.Which means it was working.

Meemah, There are a significant number of people that do have success with the VNS. Your daughter should ask her neurologist about the VNS and about new medications that have come out in the last few years.

Has anyone on here ever had a problem with the body rejecting the implant and "pushing it out" through the skin? My daughter got her implant in 2006, and just needed the first replacement of the generatory/battery in December. The new generator is now pushing through her skin (I had her at the ER last night) and is going to come out. Is this normal? Does it mean something was done wrong?

@ LoriThe magnet can activate the VNS from about a half inch away. Clothing does not affect the magnetic field generated by the magnet. As far as the number of swipes, well, activating the device using your magnet causes the VNS to send a much stronger signal to your brain... I describe it as a feeling like a swarm of bees buzzing in your throat. So more than 2-3 times in a matter of minutes can be irritating. Note that if you successfully activate it, it doesn't "doubly" activate with a second or third rapid swipe... that is, if you are trying to activate your or someone else's device, you can rapidly rub the magnet over their chest in the general vicinity for a few seconds and it will only activate once.Cheers!Scott

Yes, pressing against the device or near the VNS can cause some pain. It reduces as time goes by, however I imagine that the pressure it takes to lift your client would cause pain even after significant time for healing has passed. Thanks for the note.

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What is Epilepsy

Epilepsy is a disorder characterized by recurring seizures, which are disturbances in the electrical activity in the brain. Seizure types range from a momentary disruption of senses to a loss of consciousness and violent movements that can last for minutes. There is no single cause for epilepsy; however epilepsy can sometimes be associated with an illness, head injury, or abnormal brain development. It is estimated that 1-2% of the population has epilepsy, and of those, approximately two-thirds respond well to medical treatment.